All Outputs (20)

Expanding Qualitative Interviewing for Studies Involving Adults With Different Communication Needs: Reflections on Research With People Living With Motor Neurone Disease (2024)
Journal Article

This article explores the challenges and adaptations we undertook to engage people with different communication needs, specifically those living with motor neurone disease (MND), in qualitative research interviews. While interviewing those in advance... Read More about Expanding Qualitative Interviewing for Studies Involving Adults With Different Communication Needs: Reflections on Research With People Living With Motor Neurone Disease.

Understanding patient views and experiences of the IDENTIfication of PALLiative care needs (IDENTI-PALL): a qualitative interview study (2024)
Journal Article

Background Palliative care improves quality of life for people with life-threatening illnesses. There are longstanding inequalities in access to palliative care, with many people never identified as having palliative care needs, particularly frail ol... Read More about Understanding patient views and experiences of the IDENTIfication of PALLiative care needs (IDENTI-PALL): a qualitative interview study.

Understanding living with tracheostomy ventilation for motor neuron disease and the implications for quality of life: a qualitative study protocol (2023)
Journal Article

Introduction: Home mechanical ventilation can be used to manage symptoms of breathlessness and sustain life for people living with motor neuron disease (plwMND). In the UK, less than 1% of plwMND use tracheostomy ventilation (TV). This contrasts with... Read More about Understanding living with tracheostomy ventilation for motor neuron disease and the implications for quality of life: a qualitative study protocol.

Role and response of primary healthcare services in community end-of-life care during COVID-19: Qualitative study and recommendations for primary palliative care delivery (2022)
Journal Article

Background: The need for end-of-life care in the community increased significantly during the COVID-19 pandemic. Primary care services, including general practitioners and community nurses, had a critical role in providing such care, rapidly changing... Read More about Role and response of primary healthcare services in community end-of-life care during COVID-19: Qualitative study and recommendations for primary palliative care delivery.

Talking about death and dying: Findings from deliberative discussion groups with members of the public (2022)
Journal Article

Talking about death and dying is promoted in UK health policy and practice, from a perception that to do so encourages people to plan for their end of life and so increase their likelihood of experiencing a good death. This encouragement occurs along... Read More about Talking about death and dying: Findings from deliberative discussion groups with members of the public.

‘It’s Not Like in the Films’: Bereaved People’s Experiences of the Deathbed Vigil (2022)
Journal Article

This paper explores how people enact and experience the deathbed vigil when someone close to them is dying. It draws on qualitative interviews with 34 bereaved people carried out as part of a wider study exploring public perceptions of death and dyin... Read More about ‘It’s Not Like in the Films’: Bereaved People’s Experiences of the Deathbed Vigil.

Measuring quality of dying, death and end-of-life care for children and young people: A scoping review of available tools (2022)
Journal Article

Understanding patient views and experiences of the IDENTIfication of PALLiative care needs (IDENTI-Pall): a qualitative interview study protocol (2022)
Journal Article

Introduction More people are living with multimorbidity, defined as two or more long-term physical or mental health conditions. Multimorbidity is associated with poor quality of life and high treatment burden. Palliative care identification tools hav... Read More about Understanding patient views and experiences of the IDENTIfication of PALLiative care needs (IDENTI-Pall): a qualitative interview study protocol.

A Relative Absence: Exploring Professional Experiences of Funerals Without Mourners (2020)
Journal Article

© The Author(s) 2020. When someone dies, it is usual for relatives to gather at a funeral to embody a collective act of eulogy for the deceased and stand against the finality of death. When someone who lived alone dies alone at home, it is not always... Read More about A Relative Absence: Exploring Professional Experiences of Funerals Without Mourners.

Ethical challenges in researching and telling the stories of recently deceased people (2020)
Journal Article

© The Author(s) 2020. This paper explores ethical challenges encountered when conducting research about, and telling, the stories of individuals who had died before the research began. Cases were explored where individuals who lived alone had died al... Read More about Ethical challenges in researching and telling the stories of recently deceased people.

‘My life's properly beginning’: young people with a terminally ill parent talk about the future (2020)
Journal Article

This paper explores how young people who are living with a parent who is dying talk about the future. Drawing on a qualitative, interview study, I argue that young people are able to move imaginatively beyond the death of a parent, and in doing so, t... Read More about ‘My life's properly beginning’: young people with a terminally ill parent talk about the future.

What do family caregivers want from domiciliary care for relatives living with dementia? a qualitative study (2020)
Journal Article

In the current ecology of care, social, rather than medical, support is critical in enabling frail older people to live at home. This paper reports findings from a qualitative study about how home care workers (HCWs) support persons with dementia li... Read More about What do family caregivers want from domiciliary care for relatives living with dementia? a qualitative study.

What do family care-givers want from domiciliary care for relatives living with dementia? A qualitative study (2020)
Journal Article

Moral ambiguity in media reports of dying alone (2019)
Journal Article

More older people are living alone in the UK, thereby increasing the prospect of dying alone at home. Lone deaths tend to be regarded as bad deaths, in that they contravene notions of accompaniment and open awareness espoused in UK end of life care p... Read More about Moral ambiguity in media reports of dying alone.

The subjective world of home care workers in dementia: an “order of worth” analysis (2019)
Journal Article

The perspective of domiciliary workers is needed to recruit a high-quality workforce and meet growing demand. An English ethnographic study yielded extensive insights. To structure analysis of the study data, we apply a method developed by politica... Read More about The subjective world of home care workers in dementia: an “order of worth” analysis.

‘Going the extra mile’ for older people with dementia: Exploring the voluntary labour of homecare workers (2018)
Journal Article

Homecare workers provide essential physical, social and emotional support to growing numbers of older people with dementia in the UK. Although it is acknowledged that the work can sometimes be demanding, some homecare workers regularly ‘go the extra... Read More about ‘Going the extra mile’ for older people with dementia: Exploring the voluntary labour of homecare workers.

Managing medicines for patients dying at home: a review of family caregivers’ experiences (2018)
Journal Article

Context: Increased life expectancy, technical advances in treatment and symptom control, and the extension of palliative care in community settings not only lengthen life, but make it possible for many patients to be cared for, and to die, at home. M... Read More about Managing medicines for patients dying at home: a review of family caregivers’ experiences.

Troubling meanings of family and competing moral imperatives in the family lives of young people with a parent who is at the end of life (2017)
Journal Article

This article draws on a narrative study of young people with a parent who is at the end of life to examine how family lives are troubled by life-limiting parental illness. Young people struggled to reconcile the physical and emotional absence of fami... Read More about Troubling meanings of family and competing moral imperatives in the family lives of young people with a parent who is at the end of life.

Young people's perspectives on open communication between family members when a parent is dying (2017)
Journal Article

Objective: Living with a parent who is approaching the end of life is profoundly troubling for young people. Research indicates that family communication about life-limiting parental illness can influence how young people manage living with dying. In... Read More about Young people's perspectives on open communication between family members when a parent is dying.

Recruiting young people to sensitive research: turning the ‘wheels within wheels’ (2016)
Journal Article

This article explores the difficulties encountered in recruiting participants for a study of young people living with a parent at the end of life. Far from being a smooth, linear process, recruitment was experienced as a series of overlapping challen... Read More about Recruiting young people to sensitive research: turning the ‘wheels within wheels’.